The consent forms are signed, and I've spoken with representatives for the surgeon and a member of the anesthesiology team. Tomorrow at 7 a.m., Magnus will have his surgery.
Today it's starting to become more evident that Magnus really needs this surgery. His heart function is starting to decline, as expected, and his O2 sats are much lower today. They're now in the range of what they expected for him, but it's still scary to see the monitors beeping because his oxygen is too low. Once it went so low that they put an oxygen mask over his face for a few seconds. Nobody there seems worried, and at this point he doesn't have too much longer to go before his surgery anyway, but one of the neonatologists told me this afternoon that they might put him on some additional medications today to help his heart-lung function.
I am taking a brief break at home right now, but Iggy and I are really trying to squeeze in as much quality time with our little guy as possible today, because he's going to be completely sedated for at least the next couple of days.
The nurse practitioner who works with Dr. Azakie talked to me for a long time about exactly what will happen and what the possible complications are, which was very helpful.
The plan is that he's going to stay in the intensive care nursery where he is right now until sometime between 6 and 7 a.m. tomorrow, when the anesthesiologists will come to get him. We'll have to say goodbye to him then, and then they'll sedate him, put in a breathing tube and some other lines, and start the surgery. The procedure itself is estimated to take between 4 and 6 hours, but they told us that the earliest he would be in the pediatric cardiac unit was around 1 p.m.
She told me that they are usually able to close the chest after the surgery, but some babies get so swollen that they have to put this off for a day or two (or more, as I know from reading blogs about other people's experiences). A day after the chest is closed, the next step is the removal of his breathing tube. In some cases, the nerve leading to the diaphragm can be paralyzed during the surgery, and if this happens, he would have to undergo another, much more minor, surgery to fix his diaphragm before the tube could come out. However, she told me that this happens in "less than 10% of cases."
After this happens, he can start to be weaned off his sedatives, and will get an NG tube, and can start to actually take in breastmilk, which is exciting! And within days of that they will try to see if he'll take a bottle. Another complication that can arise from the surgery, though, is that the nerve leading to the vocal chords can be damaged, leading to vocal chord paralysis. This would lead to temporarily losing his voice, which is not such a big deal, but can also cause feeding problems. There is no treatment for the vocal chord paralysis...it just resolves on its own in 4-6 weeks.
Another thing that then has to happen is the removal of tubes that will be draining fluid from his lungs.
She told me that the shortest time anyone has ever been in the hospital after a Norwood at UCSF was 10 days, and that that has happened once or twice. The majority of babies are in there for 14-21 days after surgery. We've been hoping he'd be home by Christmas, and if all goes according to plan, it looks like that will happen.
11 months ago